Toronto Star Article

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CureIous » Wed Jun 30, 2010 2:56 pm

Huh, so they took your original work, reworked it to something else, and when they handed it back to you, you didn't recognize it? I'd be angry too.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Toronto Star Article

Postby Lyon » Wed Jun 30, 2010 4:55 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:14 pm, edited 1 time in total.
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Postby NormB » Wed Jun 30, 2010 5:59 pm

I think Dr Simka et al brought this intervention to a level beyond "often"with a high degree of safety and getting to a
level beyond "anectodal".


Take Care All


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'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby Lyon » Wed Jun 30, 2010 6:22 pm

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Postby cheerleader » Wed Jun 30, 2010 6:40 pm

marcstck wrote:I was interviewed by the reporter who wrote this piece, and she used several of my quotes in the article, all taken completely out of context.....
Anyway, I've posted a full explanation of the quotes used and the context from which they were surgically extracted on my blog, which you can find here:

http://www.wheelchairkamikaze.com/2010/ ... ntext.html

Certainly learned a lesson, and if/when I again speak to the press, I'll stick to the facts and not be concerned about being charming and/or likable...


So sorry, Marc. Believe me, I understand. It's no fun. I think Gen. McChrystal will watch his tongue next time, too :)
Thanks so much for clarifying. I didn't think that sounded like your "voice"...and appreciated you going on record. We're all learning.
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Postby scorpion » Wed Jun 30, 2010 6:50 pm

scorpion wrote:I am not upest fernando. My question is doesn't there seem to be a double standard on this forum when it comes to comments made about the vascular system and about CCSVI? If the poster or writer says something positive about CCSVI, regardless of their credentials, they are hailed as geniuses but if there is anything critical written about CCSVI right away the writers knowledge of the vascular system is thrown into question. Just throwin it out there.


I think I may be the first person to quote myself on thisisms!!! I still have not received an answer as to why when people that are certainly not vascular specialists post something positive regarding CCSVI they are embraced as geniuses while people who post critical articles/posts about CCSVI are called out for not being vascular specialists. Anyone??? I can certainly post many examples of what I am referring to if what I am saying does not make sense.
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Postby oreo » Thu Jul 01, 2010 6:07 am

Scorpion, the answer to your question is YES. There is a double standard. Anyone who questions anything about CCSVI is wrong. Those who champion it all deserve the Nobel prize.

As for myself, I am still waiting for science to answer a lot of questions before I make up my mind either way.
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Postby sbr487 » Thu Jul 01, 2010 6:32 am

oreo wrote:Scorpion, the answer to your question is YES. There is a double standard. Anyone who questions anything about CCSVI is wrong. Those who champion it all deserve the Nobel prize.

As for myself, I am still waiting for science to answer a lot of questions before I make up my mind either way.


This is one forum where selfless people (despite the issues they face due to MS) are going out of their way to help each other. And you felt that they are trying to further their own cause. The fact of the matter is that anything against CCSVI is spoken as a matter of fact and anything for it is "yet to be proven"

If you think MS people are foolish to blindly rally around CCSVI then why don't you try to float your own theory on MS (or any other disease) and see what happens?
CCSVI has not come to this level of acceptability just like that ...
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Postby tazbo » Thu Jul 01, 2010 7:49 am

http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf
Peer reviewed and vascular expert...a good read for all.
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Postby scorpion » Thu Jul 01, 2010 7:56 am

sbr487 wrote:
oreo wrote:Scorpion, the answer to your question is YES. There is a double standard. Anyone who questions anything about CCSVI is wrong. Those who champion it all deserve the Nobel prize.

As for myself, I am still waiting for science to answer a lot of questions before I make up my mind either way.


This is one forum where selfless people (despite the issues they face due to MS) are going out of their way to help each other. And you felt that they are trying to further their own cause. The fact of the matter is that anything against CCSVI is spoken as a matter of fact and anything for it is "yet to be proven"

If you think MS people are foolish to blindly rally around CCSVI then why don't you try to float your own theory on MS (or any other disease) and see what happens?
CCSVI has not come to this level of acceptability just like that ...


I never said any of those things or meant to imply them. I was simply asking(implying) there is a double standard on this board. That is all.
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Postby Cece » Thu Jul 01, 2010 8:18 am

sbr487 wrote:If you think MS people are foolish to blindly rally around CCSVI then why don't you try to float your own theory on MS (or any other disease) and see what happens?
CCSVI has not come to this level of acceptability just like that ...

I think this is a very good point!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CureIous » Thu Jul 01, 2010 8:28 am

scorpion wrote:I never said any of those things or meant to imply them. I was simply asking(implying) there is a double standard on this board. That is all.


Say it aint so...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ozarkcanoer » Thu Jul 01, 2010 8:29 am

There are some very good unmoderated debates on this board about CCSVI and Multiple Sclerosis. I think it just so happens that people who are hopeful about CCSVI are more likely to come to this board than people who either doubt it or just don't believe it at all. So lets say that 80% of us are positive and hopeful. Some of us are "believers" or those desparately seeking help and easily duped as some have called us. Others just think the CCSVI hypothesis is interesting and a very hopeful lead and are here to follow the research. I am one of the latter. I have actively fundraised for BNAC research. I won't be completely convinced one way or the other until there is good solid scientific evidence. But I also believe in what Dr Zamboni has proposed, that the Liberation procedure be made available for compassionate reasons. But there are also a few people (I'll pick 20% out of the air) who post here who believe that those of us who are hopeful are blind believers. I think that that is not true for many of us.

I also want to say that whatever happens over the next few years with the CCSVI in MS movement that this has been a rewarding experience and an eye-opener for me and if CCSVI is yet another failed hypothesis I won't regret a thing I have done to stir up interest and raise money for research. People with MS have so little control over their lives the way it is.

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Postby sbr487 » Thu Jul 01, 2010 8:36 am

Just for record - I am a firm believer of CCSVI but I believe that we still don't know a lot about CCSVI. I want more research not to prove or disprove CCSVI, but:
1) to understand why it works in some and does not in others
2) to corelate symptoms with problematic (and rule out benign) vein issues
3) to understand why opening up veins in one area creates issues elsewhere
4) what gene causes venous under development and how to correct it (which is of course not a problem with MS alone)
5) better stents etc etc etc
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Postby scorpion » Thu Jul 01, 2010 9:40 am

sbr487 wrote:
oreo wrote:Scorpion, the answer to your question is YES. There is a double standard. Anyone who questions anything about CCSVI is wrong. Those who champion it all deserve the Nobel prize.

As for myself, I am still waiting for science to answer a lot of questions before I make up my mind either way.


This is one forum where selfless people (despite the issues they face due to MS) are going out of their way to help each other. And you felt that they are trying to further their own cause. The fact of the matter is that anything against CCSVI is spoken as a matter of fact and anything for it is "yet to be proven"

If you think MS people are foolish to blindly rally around CCSVI then why don't you try to float your own theory on MS (or any other disease) and see what happens?
CCSVI has not come to this level of acceptability just like that ...



I do not think anyone is foolish, blind, or anything else. I am also not interested in floating any Scorpion theories around the interent. All I was asking, once again...... was for example why a medical doctor's credentials are questioned when he writes an article slightly critical of CCSVI but when people from this forum and other places, who have no medical background whatsoever, write highly technical posts relating to CCSVI they are considered experts. I was hoping for some responses but it looks like "it aint going to be so".
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